A Male Fibromyalgia Patient's Story
By Skelly, Mari and Helm, Andrea •
January 1, 1999
Tom 0. is forty-six years old and works for a Northwest telephone company. He's been married for twenty-six years and has two children. His family lives in Renton, Washington, and despite his illness he intends to continue working as long as he can.
It all started back in 1992. I just felt like hell all the time, like some-body stuck me in a sack, threw me down, and walked on my body. All my joints hurt, all my muscles hurt, tendons, ligaments; everything hurt. I'm a lineman for a telephone company, which means a lot of climbing poles, fixing poles, replacing poles, wiring buildings as they 're being constructed so that people can have telephone service. It's heavy, physical work. I thought maybe that had something to do with it. I was tired, tired of it all. So I went to my family doctor, but it took a long time to come up with the diagnosis of FM, almost two years. I went back two or three times to tell him that what he'd given me wasn't helping me; there was still something wrong, more than just the regular pain of getting up every day. It's frustrating - sometimes you pay for all these fancy expensive tests and they come back normal. And yet you know there's something going on.
I eventually read an article about FM and asked my doctor, "Do I have FM?" He said, "You're a strong candidate for it." They did more tests on the tender places, and he said, "We're about 112 percent positive that's what it is."
I didn't know a heck of a lot about it before I got diagnosed. I thought, Well, fine, they know what it is now. (How naive I was.) It didn't really shock me. I thought, I can deal with this. I had been dealing with it for a year or two before I even knew what it was. The only difference was that now I had a name for it.
Before I started having symptoms, I had one epileptic seizure, out of nowhere, back in 1989. I got called out to check on a pole that was damaged in a car accident, but I didn't see it. So I came back home and went back to bed. I woke up the next morning about 7 A.M. and two medics were standing over my bed. I'd literally peed all over myself. I'd also chewed my tongue up, and they were looking at me like I'd just grown a third eye. It was quite a wild deal. I couldn't drive for six months. I didn't correlate the seizure with anything at the time, but maybe it did have something to do with the FM. Maybe my brain has a glitch in it that's making everything hurt. I don't know.
I once could do anything, any time, all day long, and not hurt. Baseball, football, hiking, walking, fishing, lifting, pushing, shoving, anything, it didn't matter. Wrestle around with the kids. I could cut firewood all day, stack it, then get up the next day and everything would be just hunky dory. But those days are very rare now. I'm not as quick as I used to be, not as flexible. I've given up playing baseball. I couldn't play as well as I wanted to play and I'm not going to be some old geezer out there and embarrass myself. The thing I probably enjoy the most in life, other than my kids, is hiking, backpacking going off for a week. Used to be, every other week I'd be gone, just me by myself. That's where I liked it, away from everybody. But I'm getting to the point where I don't know if I can do it any more. It's beginning to wear me down. Last year, I took my youngest brother and kids with me, and I had such a hell of a time that they ended up carrying some of my stuff back. That had never happened before.
My family is my only real support group. My kids are very understanding, luckily. And so is my youngest brother. I've disappointed him once or twice when we've been all set to go on a hike, and then I felt extremely bad and had to call it off. Being diagnosed with a chronic illness is depressing. I'm beginning to wonder, Is this ever going to get better? Maybe I should quit my job, but I can't look anywhere else to earn the money I do now. Luckily, this hasn't affected my marriage. I just moan a little more, and she says, "Yeah, I know." She's always been less physically active than me, so I guess I'm finally slowing down to her speed.
I try to ignore the pain as much as I can. I take a multivitamin every day, but nothing else. (I've never really done any research into anything else to take.) I've always watched what I eat; I try to not eat a lot of fats and meats. I'm only forty-six. I don't want to be an invalid; there's so much to do out there. I don't want to sit back and watch it all go by, as so many people have to do or choose to do. I've never even told my friends about it. These are people I work with. They're a bunch of pretty hardy guys, even though they're old guys, my age and older, so they've all got aches and pains, too. I'm just another worker. I don't want to stick out.
I really wonder, though, if they would understand. I think part of it is that macho-man image thing. If I said, "Hey man, I've got FM and I'm feeling like hell today," maybe they would look at me like, Huh? Women can call up their friends, have a little get-together, and talk about this stuff. "What do you do and how do you get help and blah blah blah." I envy that about women. For a man, though, it's different. We all complain. But we don't really talk about it. We just go on.
I'm a firm believer that if the spirit is willing, the body is able. But, boy, I tell you, the older I get, the more this stuff just doesn't go away. I try not to give up, but it's slowly chipping away at my life, one molecule at a time. Some days I'm just plain physically immobilized. I keep thinking, Well, out of the whole damn encyclopedia of bad things that could happen, this ain't nothin'. Every day, I try to convince myself that this ain't nothin'. Which it isn't, nothing other than one big pain.
Source: Skelly, Mari and Helm, Andrea. “Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome; Insights from Practitioners and Patients.” Hunter House Publishers 1999.